Weight: 11.4kg
The weekend has been a really tough one on all of us, but especially Tayden.
We held his peg coming out / belated 2nd birthday party on Saturday and in a nutshell the best way to describe it would be a disaster for us. The other kids who attended had a total ball and really enjoyed it, but unfortunately my little man did nothing of the sort. We decorated the room like a play picnic and he was so excited to get inside and while I was setting up he helped me and was so happy, clapping his hands and smiling saying, “Yay!” Then, the kids started arriving and he wasn’t too happy anymore...
He refused to even stay in the same room as the party and spend most of it in granny’s arms, with his Aunty Raleen or playing with the pool leaf scoop – away from any of the other kids. He was visibly distressed about the whole thing and it broke my heart to see him so upset.
After a nap, the OT arrived for the afternoon session. What a waste of time for all concerned, the OT couldn’t even get close enough to touch him. He was so upset and frustrated with life. After that session we decided to cancel all OT with immediate effect for the next 3-4 months after which we will reassess the situation and see how he is doing and when we will resume it again. It just doesn’t make sense to actually go to the effort to do the OT when it upsets him so much and he is generally not doing so well.
The drinking is still at about 100ml or below per day and we are sure that he is why he is so frustrated as well. He doesn’t realise he is hungry or thirsty or how to explain that he is which is causing us major issues as you can imagine because he doesn’t know how to explain it and just gets so frustrated that he totally freaks out. He is also getting freaked out by places that have a lot of people or strangers even more so.
The major issue is that he is still not sleeping well and apart from that, he is hungry and thirsty and feeling all these new sensations that he doesn’t know. The nightmares are now at fever pitch since the party and the OT session and we are at our wits end with everything as we don’t know how to help him except to be there, be patient, give him love and let him develop and try and deal with these new things in his life. People don’t realise how traumatic it is for a little soul to have the feeding peg taken out, there are so many new things that the child needs to learn and experience. They have never been hungry before, never been thirsty before and now they are feeling all these new feelings and don’t know how to deal with them or what to do.
Tayden’s lack of speech is also a major source of frustration for him. He is trying very hard and there are new sounds each day as he tries to say new words but as yet he has not been very successful BUT there is an improvement. These things take time but it is not easy to explain that to a 2 year old when there are so many new things happening around him and he cant even begin to try and understand it all.
Our main aim is to try and get the times of frustration less and to help him to communicate what he wants to me and those around him. We are trying to sort out the sleep issue as well because if he is not sleeping well, we cannot expect him to be doing well during the day, to be able to concentrate or be happy and content.
Tayden and I are taking turns crying in frustration….although sometimes we do manage to cry together as well. Let’s hope he starts feeling better soon and that mommy is able to understand what he wants and be able to support him as he continues on the road of developing his talking skills and getting better each day!
You will see that there aren’t actually any pics of him here, unfortunately he didn’t stay in the room long enough for me to get a picture of him.
Today I question whether I did the right thing in taking this peg out when we did, maybe he wasn't ready. We never expected post Graz to be so hard... :-(
The weekend has been a really tough one on all of us, but especially Tayden.
We held his peg coming out / belated 2nd birthday party on Saturday and in a nutshell the best way to describe it would be a disaster for us. The other kids who attended had a total ball and really enjoyed it, but unfortunately my little man did nothing of the sort. We decorated the room like a play picnic and he was so excited to get inside and while I was setting up he helped me and was so happy, clapping his hands and smiling saying, “Yay!” Then, the kids started arriving and he wasn’t too happy anymore...
He refused to even stay in the same room as the party and spend most of it in granny’s arms, with his Aunty Raleen or playing with the pool leaf scoop – away from any of the other kids. He was visibly distressed about the whole thing and it broke my heart to see him so upset.
After a nap, the OT arrived for the afternoon session. What a waste of time for all concerned, the OT couldn’t even get close enough to touch him. He was so upset and frustrated with life. After that session we decided to cancel all OT with immediate effect for the next 3-4 months after which we will reassess the situation and see how he is doing and when we will resume it again. It just doesn’t make sense to actually go to the effort to do the OT when it upsets him so much and he is generally not doing so well.
The drinking is still at about 100ml or below per day and we are sure that he is why he is so frustrated as well. He doesn’t realise he is hungry or thirsty or how to explain that he is which is causing us major issues as you can imagine because he doesn’t know how to explain it and just gets so frustrated that he totally freaks out. He is also getting freaked out by places that have a lot of people or strangers even more so.
The major issue is that he is still not sleeping well and apart from that, he is hungry and thirsty and feeling all these new sensations that he doesn’t know. The nightmares are now at fever pitch since the party and the OT session and we are at our wits end with everything as we don’t know how to help him except to be there, be patient, give him love and let him develop and try and deal with these new things in his life. People don’t realise how traumatic it is for a little soul to have the feeding peg taken out, there are so many new things that the child needs to learn and experience. They have never been hungry before, never been thirsty before and now they are feeling all these new feelings and don’t know how to deal with them or what to do.
Tayden’s lack of speech is also a major source of frustration for him. He is trying very hard and there are new sounds each day as he tries to say new words but as yet he has not been very successful BUT there is an improvement. These things take time but it is not easy to explain that to a 2 year old when there are so many new things happening around him and he cant even begin to try and understand it all.
Our main aim is to try and get the times of frustration less and to help him to communicate what he wants to me and those around him. We are trying to sort out the sleep issue as well because if he is not sleeping well, we cannot expect him to be doing well during the day, to be able to concentrate or be happy and content.
Tayden and I are taking turns crying in frustration….although sometimes we do manage to cry together as well. Let’s hope he starts feeling better soon and that mommy is able to understand what he wants and be able to support him as he continues on the road of developing his talking skills and getting better each day!
You will see that there aren’t actually any pics of him here, unfortunately he didn’t stay in the room long enough for me to get a picture of him.
Today I question whether I did the right thing in taking this peg out when we did, maybe he wasn't ready. We never expected post Graz to be so hard... :-(